Road to nowhere

Dustin Hoffman's character in the 1988 film Rainman is for many people the personification of autism – almost childlike, socially impeded, but a genius at memorising long sequences of numbers.

While that stereotype exists, it's rare. Similarly, few people with the condition are likely to be whisked out of residential care by a long-lost brother and taken on a road trip to Las Vegas. Instead they face a more mundane existence that often culminates in the odd part-time job or years spent pottering around the house.

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And this is just not enough, says Steve Broach, policy manager with the National Autistic Society (NAS). 'It is a basic human right to have meaningful activity,' he says. 'We've found that only 12 per cent of those with Asperger syndrome [a common form of autism] are in full-time employment, despite the vast majority wanting to work.'

A report published in 2001 showed that an 'alarming proportion' of people with autism spent their time helping around the house or doing nothing, says Steve. 'It's a huge waste to society as well a waste for the individual.'

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In addition, only a tiny minority of people with autism live semi-independently in supported housing. Most need help with daily tasks such as shopping and managing money, and only around a third are in residential care. The rest live at home with their families, says Steve.

Odd one out

The NAS estimates that autism, or autism spectrum disorder, affects 1 per cent of the population in different ways.

A quarter of people with the condition have a low IQ and learning disabilities. Less severely impaired are the 75 per cent who have normal or above average intelligence, including those with Asperger syndrome. What they all share, to a lesser or greater degree, is a 'triad of impairment' – communication, social and imagination difficulties.

Communication problems range from being mute to taking things too literally and using pedantic, formal language even in casual settings. Some people mimic what's said to them, others repeat themselves.

People with autism cannot read body language or other social cues, such as tone of voice. They may talk loudly or for too long, or crowd another's personal space. Some have odd behaviour such as flapping their hands or rocking that can draw unwanted attention, teasing and bullying.

And they are unable to imagine what another person's life is like, or what they might feel or think.

It's hard enough applying for a job without the likelihood that you'll talk too loudly at your interview and start rocking if you feel stressed. Would-be employers, meanwhile, face having to learn new ways of communicating – people with autism take what is said literally, so it is no good asking them to 'run off some copies' or 'take this to the photocopier'. Better to say, 'photocopy this 20 times'.

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Better prospects

But such difficulties can be overcome. The NAS runs an employment support service called Prospects, which is partly funded by the Department of Work and Pensions. People with autism are referred from Job Centres after initial assessment by a social worker.

Most join a 12-week preparation course that covers communication and interview skills and 'self-advocacy' – learning how to explain your disability to others. Particular attention might be paid to making eye contact or avoiding shouting during practice interviews. Work experience is also part of the programme.

People with autism usually go into a job that involves a routine and little contact with the public, says Judith Ashley, employment consultant with Prospects in London, which has around 100 people on its books. Warehouse work, data entry, mailroom jobs and gardening are typical.

'A lot of our clients like consistency and routine. Data entry jobs are very routine,' she says. 'There's a set job, you come in, you do a set thing, you go home. I've got a lot of clients who work for the civil service as administration assistants.'

Prospects' consultants attend interviews with their clients and accompany them when they first start work, scaling back their support over time. They also talk to employers from the outset, giving tips on interviewing, discussing any issues arising once employment begins and raising awareness among staff.

'Disability does tend to scare a lot of people,' says Judith. 'Normally they're overcautious, and then when they get to know the client they realise that he's a lovely guy and that, although there are certain things he can't do, he can do the job just as well as anybody else.'

She says Prospects' work is also positive for employers. 'It helps them, I think, to become more positive about employing more disabled people in the future. It dispels the myths that people have about disability.'

Shirking responsibility

But Prospects only runs in London, Sheffield, Manchester and Glasgow, and so many people with autism are missing out. On top of this, Steve Broach says more needs to be done earlier in life.

Parents say social-skills training, for example, is essential if their children are to have any independence. But new NAS research, due for publication, found that few are getting this kind of support. Suitable play and leisure facilities – crucial to development – are also lacking. Carers are missing out on benefit entitlements and having difficulty finding appropriate transport and housing.

These shortfalls are partly because autism spectrum disorder, especially Asperger syndrome, has only recently been identified, so agencies are having to play 'catch up', says Steve. 'One of the real problems is that social services departments just don't know enough about autism to be able to provide support.'

Steve adds the condition should be included in basic training for professionals such as teachers and GPs.

Gary Smith, head teacher at Manor Fields Special Needs School in Colchester, agrees there are big gaps in services for people with autism. Responsibility for a child's needs moves to a different agency at certain age thresholds, each time forcing parents to fill out more forms and forge new contacts.

'Parents don't need to be jumping through hoops at every stage. It should all be joined up,' says Gary. His aim is for children to begin getting support from housing and employment services while they're still at school, allowing for a smooth transition into the workplace and community.

'I've decided my career is going to be about making it happen,' he says. 'I've got 20 years left.'

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